NHS appointments

I would be disappointed too, but ...

by Gemita - 2023-04-08 08:04:59

Piglet, that is actually fairly rapid for a cardiology appointment in many NHS hospitals.  For us in our London Hospitals it was 6 months wait for me with complex arrhythmias and up to 12 months for my husband who has right sided HF (and that was after waiting several years to see a cardiologist because of Covid).

In your shoes I would contact the consultant’s secretary by email (or phone) asking whether they could either bring forward your telephone consultation or place you on the cancellation list for an earlier appointment.  Failing that, to ask for your telephone appointment at the end of June to be changed to a face to face appointment so that any physical checks or other tests could be performed on the day of your appointment.  I would keep "gently" pushing and chasing this up.

Update: alternatively, ask your GP's secretary if she could kindly speak to the consultant's secretary on your behalf to see whether she could get an earlier, face to face appointment.  This has worked for me several times.

What are your symptoms like at the moment?  Use these to your advantage if you need to Piglet.  Have you now completely moved onto Bisoprolol and stopped the Atenolol?  Clearly your ectopics still continue, but have there been any changes?   Hope you are working with your GP also to review all your other meds?

Be charming to everyone.  Keep them on your side and make them want to help you is my best advice.  The NHS is clearly not working for many of us and some “gentle, firm persuasion” is needed to get what you want, when you most need it.  So come on Piglet, use your charm and don't take no for an answer.  We will fight back

Frustrating

by SeenBetterDays - 2023-04-08 10:30:22

Piglet, I'm so sorry you are continuing to experience ectopics and that you are not able to quickly access an appointment. Several months can seem like an age when you are struggling with symptoms and need to establish what's going on.  I cherish and admire our NHS but have also been frustrated by slow and unresponsive follow up care. As Gemita said, you may not be able to accelerate your appointment but persistence is key.  Unfortunately, you have to politely make a nuisance of yourself until someone listens. You absolutely should have a face to face appointment and a telephone discussion is not in any way equivalent to an in person consultation. I don't like the move to remote appointments which extended during COVID and now seems to be the default for many appointments.  I used to be able to get a face to face appointment with a GP, it is now made so difficult for patients to achieve this.  Whilst telephone discussions have their place in certain circumstances, there are times when a physical appointment is absolutely what is needed and justified to provide proper patient care.  I feel your frustration Piglet and hope you manage to pin down an in person appointment as soon as possible. In the meantime, I hope your ectopics start to settle. Let us know if you have any success.

Gemita

by piglet22 - 2023-04-08 10:35:58

Thanks.

I'm as much disappointed for the GP who has done her best.

I do try charm before anything else. I've worked with some fairly stroppy people in the past and I leave the mouthing off as a last result.

I get some bad vibes from this cardiology department and I think it's a mixture of celeb leaders and team members who have had their wings clipped.

In over 18-years it's gone from "how are you today?" to "you can leave your coat over there"

They've also gone from letters to appointments via Patients Know Best and a pdf copy. I can cope with that but it would be nice to be felt welcomed.

Although the letter does give a named consultant - the one with a lot of other interests - it does add "or another member of the team". That usually means the physiologists but I might be pleasantly surprised.

Yes, I'm off the Atenolol and on the Bisoprolol lowest dose. I do wonder if anyone at the surgery makes a connection between medication and symptoms. Medication reviews have gone and a surgery full time pharmacist annual conversation that only happened once seems to have quietly rolled off the edge.

I do feel a bit better after the change, but now and again the 37 BPM reinds you that it's still alive and kicking.

I'll go with what's on offer for now and still have the A&E nuclear option.

Other than that it's grease the palms of the celeb - won't happen - or change my name to a door opener like HRH Duke of Sussex. He wouldn't mind as he's never been there and has more pressing things to do.

As an aside, one of my relatives has two consultants in the family.

Both refuse to take private patients.

SeenBetterDays

by piglet22 - 2023-04-08 10:46:39

Thanks SBD

As I said to Gemita, the "letter" came with the ominous "or a member of the team".

The GP did politely ask for an in person appointment and it seems that even they are over-ruled.

One thing you can't do over the phone or at least not here, is a 12 lead ECG, or look you in the eyes.

On that front, I'll take matters into my own hands and knock up a crude ECG that I can record here at home.

I totally agree with the frustration. By my caculations, it's about 90 days to wait. Not long, but when each of those days is wondering whether or not it will be a good or a bad day, it can seem like a very long time.

A correction

by piglet22 - 2023-04-08 10:50:09

My first comment reads as though I had the pacemaker fitted in January 2023.

What I was actually meaning that I get the ectopics with the pacemaker fitted (actually had them for 18 years). The ectopics started in January 2023.

Piglet

by Gemita - 2023-04-08 15:10:29

Piglet, I see you have got lots of helpful comments from both Marybird and SeenBetterDays, so my work has been done for me.  I just wanted to say that at least you will have plenty of time to prepare yourself for your next appointment and I would keep dates of when you feel particularly poorly due to your plummeting heart rates.  If you have a Kardia Mobile or something similar, do a few recordings during symptomatic episodes to take the evidence with you to your appointment.  Evidence and Symptoms are what they are looking for and what they can treat.  The more symptoms (sorry) and the more evidence you can take with you, the better Piglet.

I have to work so hard too to get our medication reviewed.  We have a full time pharmacist attached to our surgery and I often have to speak to them to get my husband’s meds changed or dosages reduced.  It is a changing situation since his blood pressure has started to fall on minimal meds now which is very very unusual for him and had I not been taking his blood pressure frequently, we would never have known this.  No wonder he was beginning to feel dizzy and weak.  Our health conditions never stay the same and unless we monitor and look for changes, we could get into a lot of trouble on multiple meds.

I am glad the Bisoprolol is at least no worse than the Atenolol and hopefully it is better for you in terms of safety.  I am glad you are feeling a bit better after the change.  Now I just hope for an early appointment or a vast improvement in your condition.  Enjoy the spring sunshine and have a wonderful Easter (everyone) xx

Piglet

by Rch - 2023-04-09 01:14:16

I'm not sure what the scope of a GP in the UK is, but he/she should be able to do some basic work up such as surface ECG, Zio patch, echo or CXR etc etc and do a curbside consult with the Cardiologist and give you some advice while you wait for your Cardiology appointment. 

Keep records / if bad don't hesitate to go to A & E

by LondonAndy - 2023-04-09 05:09:22

I agree with Gemita - the NHS is great when you get to see someone, but it is the wait for appointments, particularly diagnostic ones, that takes all the time. This seems to be nothing new: in 2013 I was getting increasingly frustrated with the two-month waits for tests such as ultrasounds when I was daily experiencing severe shortness of breath on exertion. Then I had what I thought was a heart attack, called 999 for an ambulance, and from then the treatment all kicked in. Within a week I had a replacement aortic valve in a specialist heart hospital. 

It sounds like you have some equipment at home, presumably including a blood pressure machine? In my experience, having evidence of your issues is really useful. (You are right: 37bpm when the pacemaker is set to 70 is clearly wrong, but if it is intermittent then having evidence of when, and ideally how often, it occurs will be valuable.

This may seem odd given that everything is online these days, but I have found writing a letter and sending it by post to doctors quite effective. Perhaps it is the novelty of paper instead of the deluge of emails? I wonder if writing to your cardiologist, politiely and with evidence, might work? Eg "I am looking forward to our telephone call on XXX date, and thought it might be helpful to send you this series of recent test results from readings I have taken at home when I have symptoms, which are alarming me and feel something is seriously wrong ... etc"?

But frankly, if you are feeling bad, much though I hate saying it I do fear the best way to get treated is to call an ambulance. Though perhaps not over the next few days, when there is the junior doctor strike.

Good morning

by piglet22 - 2023-04-09 10:40:48

A big thank you to all who have offered so much valuable advice and I have read every bit.

I take part in a number of forums, some very technical, some DIY and so on, but this is by far the most polite and caring of all.

A bit of background. I have grown up side by side with the NHS since it started. I had one year before it started in 1948.

My mother had all her teeth removed when she was 21 because they couldn't afford even the dentist then and extraction was cheaper than treatment which was pretty brutal even if you could afford it.

My grandmother ended her days in what in the UK are called Almshouses, now that might be a nursing home or a care home, without any mod cons or staff.

I still have vivid memories of childhood illnesses and treatments.

I had chicken pox badly and remember the family doctor coming up the stairs at home and giving me some vile pink medicine. I had the early polio vaccinations, a set of three with the reusable big glass syringes that put me off needles for life. One dentist working on her own anaesthetising you as a kid as routine, another still using belt and pulley drilling machines.

So things have improved and probably reached a point some decades ago when demand and supply were in good balance and you could at least see the GP without a lot of hoo ha.

What we are seeing in the UK is a monster of an organisation struggling to stay afloat and often patients suffering as a result. I can't help feeling that patients are being used as a weapon in what is a dispute between NHS staff and the government.

There’s no doubt that the Covid pandemic has been used to good effect for primary care to reorganise under the covers and introduce probably too many ways of not sitting in front of a GP.

The introduction of pacemaker home monitoring is just one example of how relatively expensive in person clinics have been replaced by what is now described as a virtual device clinic.

Apart from the first diagnosis, in 18 years I haven't had the need to see a consultant, but when I do, it's turning out to be a bit of a challenge.

I'll go through some of the points that everyone has raised.

Gemita

A mine of information. Thanks again.

I'm prepared to let this go along for a bit, but certainly I'm not going to let them have too much rope. I'm prepared to give them the benefit of the doubt and let them prove what they can do. But the clock is ticking.

I've taken on some large organisations in the past, some who have gone to great lengths not to do anything and apart from Samsung, I've always got a result. When I get to the point where politeness is going nowhere, then I take the other routes of involving regulators, consumer support people and so on.

You are absolutely right on self-monitoring. You probably have better records than the professionals. Your evidence is every bit as important. If you relied on the annual check-up you could be in a heap of trouble.

There is a school of thought that chooses not to look for bad news, but in my book, you can find out the hard way or you can find out the easy way. Either way, you will find out and maybe wished afterwards you had taken the readings

SBD

I'm in agreement with all you say.

Marybird

Many thanks for putting so much effort in. I can see I'm going to have to get some textbooks out. So many of you have a real depth of knowledge of the subject that would put some medics to shame.

I did like the bit about running the billing people. It's often the way that it comes down to the person. You either get the "jobsworth" or you get someone with a bit of humanity and goes the extra mile. I too have a short list of people who have gone out of their way for me when they needn't have had,

I'm not too confident about how much information the bedside monitor gives out. Either it does and it's not being acted on or it simply doesn't.

I have no evidence that the Medtronic MyCareLink sends out anything about abnormal heartrates. I can feel and measure 30 to 40 BPM, but does it send it out? The only thing the physiologists mentioned once was an AF event which I hadn't noticed.

I have a lot of confidence in the BP monitor and not quite so much in the oximeter.

The BP monitor detects these ectopic led events very well. The oximeter starts well with low BPM then I think some averaging routine takes over and it filters out the abnormal rhythms.

I certainly have had really prolonged episodes of irregular rhythms where the BP monitor simply gives up trying to get a reading.

My theory about the minimum setting (70 BPM in my case) and actual felt and recorded BPM is that the ectopics are fooling the pacemaker into "thinking" the rate is good when it isn't. I've mentioned this before and in electronics, it's called retriggering. If it happens often enough, a timer which there must be in the PM, can get to the point where it never times out and in the case of the PM, introduces long pauses.

I'm certainly with you on the "going into hiding" syndrome. It's a pity that there are still medics who only believe what they see in front of them and I had a real struggle to get as far as a PM in the first place. The real clincher was me being in heart block when I sat in front of the consultant. The quickest diagnosis I've had in a long time.

What I will be doing fairly soon is to get something set up here that will do and record what is going on during these episodes in some detail. Yes, I could get a Kardia device, but I usually make rather than buy – not everything of course – and as the heart is electrical and I do electronics, it has to be worth a shot. Not for everyone though and it’s taken me decades to learn.

There are some impressive DIY ECGs out there.

Rch

The GPs are pretty good all things considered but they are generalists on the whole.

The last ECG they did for me gets interpreted by software rather than person and it churned out a list of possible causes that included several heart attacks and enlarged heart.

As ever, it's getting into the surgery in the first place.

LondonAndy

Yes, the A&E route does get you seen, but as a "won't make a fuss male", I see it as the nuclear option. I have used them for fractured skulls and broken pelvises, but in both cases, I didn't have a choice.

The only other time was when the first PM failed, fortunately at home. Even then, a senior paramedic said the symptoms of twitching pectoral  muscle couldn't be down to the PM.

The fact that it was changed the next day proved him wrong and it didn't say much for the battery end of life monitoring either, because that failed as well.

Missed a bit

by LondonAndy - 2023-04-09 10:50:43

I share your view of A & E, and like you, I don't seek to abuse it. I genuinley thought I was having a heart attack (sudden dizziness, sweating, nausea) when I called 999, but it unlocked the treatment I clearly needed.

I see you have missed the main point I made, of writing to the Cardiologist. Worth a try?

LondonAndy

by piglet22 - 2023-04-10 05:26:44

Hello

I didn't miss your point at all.

As I said, I read all the comments.

I've taken note of your suggestion of writing directly to the cardiology department but I don't think it's appropriate at the moment.

I must at least give them a chance however uncomfortable that might be. Last night down to 112/53 BP 37 BPM.is uncomfortable.

They didn't take any notice of what the GP wrote and the surgery has better lines of communication than me.

However, if it turns out that their telephone consultation is a waste of time with no constructive outcome, then the gloves will be off.

I'm trying to be reasonable with them despite the fact they haven't had a good track record to date. They closed all the local clinics plus managed to let the first pacemaker fail for letting the battery get so low.

I first contacted them back in January 2023 about the problems but nothing happened apart from one of the physiologists phoning and telling me "it's the algorithm". I wonder if the physiologists talk to the consultants.

That's why I went through the GP.

But, believe me, if it looks as though they aren't bothering or are trying to stall things, then I will be writing and it won't be just to them.

Private?

by Jonny - 2023-04-28 13:58:40

I have my annual PM check by the HNS but they use a local private hospital which I'm always sent to. This private hospitals (part of Ramsey Group) fees for a PM check are just £50. I assume most others are similarly priced. Maybe worth it to stop the anxiety?

Jonny

by piglet22 - 2023-04-29 06:27:53

Thanks for that information.

Am I right in thinking that you go to the private clinic as an NHS patient and that any fees are paid for?

Or do you go as part of a private healthcare plan?

It's a different story where I am in the Southeast. The hospital I go to, or better to describe as under the care of, certainly don't send patients to private hospitals for checkups.

In fact, the hospital trust has been eroding services for pacemaker patients for some years going from local hospital 6-monthly clinics in person, to annual, then closing the local clinic, then finally closing all routine face to face checkups in favour of the bedside monitor and so called virtual clinics.

I'm not anxious about the symptoms I'm getting and just learning to live with them. The GP has done what she can, but as of today, I'm still waiting another 8-weeks to get a 15 or 20 minute phone call from someone at the end of June.

The consultant supposedly calling me has at least three other posts in private hospitals and I would take a dim view if he was to offer faster access to advice by paying a fee'

The main problem as I see it is that the NHS is on it's knees and needs urgent treatment itself.

In recent news, some surgeons are only able to perform operations once every fortnight because of lack of support services.

I can see that you have grown up with the NHS and like me have seen it grow from family doctor visits to large GP surgeries and huge regional hospitals. Hardly a day passes now without some crisis in the NHS. Right now, I'm thinking that health services in this country are struggling.

Anyhow, keep well and look after yourself.